General Advocacy Communications Science Archives | 04 January 2018

Spark Therapeutics INC announce models of patient access to LUXTURNA

On Wednesday January 3rd 2018,  Spark Therapeutics INC announced a series of payment models designed to help the process of patient access to its new gene therapy LUXTURNA in the United States, which is the only country where the once in a lifetime therapy is currently approved.  The company also announced the cost of the treatment.

Following the announcement some media outlets have stated that the price outlined is per year and this has caused concern among patients about affordability going forward. It has been made clear by Spark Therapeutics INC that the announced price relates to a once in a life time treatment. This is because the company stands over the durability of this product.

In an email to members Benjamin Yerxa, CEO of the Foundation Fighting Blindness in the United States said ‘The access programs include contracting models with insurance companies that are designed to cap an eligible patient’s out-of-pocket-costs to in-network limits.  For a commercially insured patient who seeks treatment in-network, their costs should be at or near zero for the LUXTURNA treatment and follow-up'.

On the announcement of the access programs Christina Fasser – president of Retina International stated ‘It is very important for the patient community in the United States to have clarity on the access process being developed by Spark Therapeutics INC and today we have that. Retina International commends Spark Therapeutics INC for its innovative approach to ensuring patient access in this very novel space.  We hope these approaches will expedite the journey to treatments for our American friends and look forward to approval of this life changing treatment in other regions and ensuring timely access’.

She added ‘We have heard from many patients who are curious to know if this therapy is suitable for them, to those I would stress that they should contact their ophthalmologist to receive the appropriate tests to find out whether they are eligible for the treatment. I also would like to emphasise the importance of genetic testing for all IRDs. A genetic diagnosis is a prerequisite to access to LUXTURNA and to potential future therapies. To learn more you can log onto our genetic testing  toolkit on our website

Spark Therapeutics INC has created a patient services program which will help those living in the United States  who may benefit from treatment to understand better their eligibility and to navigate their insurance coverage.

For more details on the access programs here is a link to the Spark Therapeutics INC press release



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